Behavior and Down Syndrome:
A Practical Guide for Parents
David Stein, PsyD
Parenting can be a bit like setting off on a journey without a map. With each unexpected fork in the road, the caring parent uses intuition informed by prior experiences to choose a path. For some families, this works out just fine. For most of us, a little extra guidance to understanding our children’s behavior can make a huge difference. While there are several very good books that address general child behavior, there is not much information available for families specifically designed to support positive behavior for children with Down syndrome. Dr. Stein’s guide fills this gap beautifully providing sound, practical advice for parents of children with Down syndrome. Recognizing that each child is unique but also that there are some common areas that can present challenges and also particular strategies that have proven successful, Dr. Stein gives advice that you can start using today. I am so pleased to recommend this guide to the families who come to the Down Syndrome Program at Children’s Hospital. I hope you find it sheds light on the road ahead for a more peaceful and fulfilling journey for your family.
Five Strategies for Dealing with Behavior Issues in Children with Down Syndrome
Are you looking for strategies to help improve the behavior of your loved one? Look no further! These five strategies tend to work well for individuals with Down syndrome.
Routine and structure are important for any child, but this is especially true for children with Down syndrome (DS). Individuals with DS often have trouble receiving and remembering verbal direction and remembering verbal directions if they are too complicated. Typically giving structure to small daily activities like getting dressed, bathroom activities, and meal times will help children learn these simple tasks. Sticking with the routine and talking through them in short statements of direction can be great for avoiding any negative behavior that may come from these situations. Many behavior experts, including Dr. David Stein, recommend visual schedules. These are explained in his book Supporting Positive Behavior in Children and Teens With Down Syndrome. Routine is also aided by prepping your child for the next thing they will need to do. Dr. Mary Pipan writes that transitioning between activities requires preparation, and can be eased by preparing your child verbally or visually for the coming transition. She also recommends visual schedules. Visual schedules are made of pictures of activities and places that explain the routine for the day.
Positively reinforcing good behavior is a powerful motivation for children, and especially for children with DS. Rewards can take many forms. One form is promising something in order to persuade a child to perform a certain behavior you would like them to perform. This reward can take the form of a treat or an activity that the child likes. These are spur of the moment bargains one might strike with a child, but many child behavior experts recommend a more structured reward system like a token economy. A token economy is a structured reward system normally consisting of a simple chart with pictures of positive behavior. The chart is check marked when good behaviors are exhibited, and then a reasonable reward is given to reinforce and encourage the behavior to continue. Dr Stein has a section in his book with recommendations for setting up a token economy.
Another form that can have lasting effects over time is simply praising good behavior. It is important and powerful because praise immediately gives a child a positive feeling they can associate with the behavior they just displayed. When the child displays a positive behavior, such as picking up toys when play is over or even eating their vegetables, it is important to let them know they have done a good job. High fives can go a long way!
Whenever possible, give your child a choice. This will help them feel empowered and it will also minimize negative behavior triggers. By allowing the child to choose between items you have already approved, you won’t have to force choices upon them. These can be simple choices, like what cereal to eat for breakfast or what shirt to wear to school.
Flexibility in discipline is also important. Children with DS (along with typically-developing children) will often misbehave simply for attention or a reaction, so it is important not to take the bait. Often any reaction, be it anger or laughter, is all they are looking to achieve. Ignoring minor inappropriate behavior is better than reacting. A reaction would positively reward the very inappropriate behavior you want to stop. Dr. Stein adds that when all else fails, preserve the relationship with your child. Yelling at your child for every little thing does not foster good behavior, and may do more harm than doing nothing at all.
Children with DS can easily slip into the habit of sensory seeking. Sensory input are messages we receive from our five senses, and can be used by children to sooth themselves in times of stress or to act out when they are feeling frustrated or unhappy. Some of the things they may choose to fulfill their sensory seeking may be annoying or displeasing. Some behaviors may occur out of boredom and a need for attention. Examples of sensory seeking behaviors include jumping, frequently touching others/objects, and making loud noises.
Sometimes the best way to deal with sensory seeking is to help the child direct their free time activity by spending some time with them playing, reading a book, or coloring. These behaviors can often be anticipated. Once you know what may trigger the negative activity, you can be prepared with a replacement activity to redirect the child to a positive activity.
Consistency is important for behavior modification. Children naturally test boundaries and make unconscious notes of how their behavior is dealt with and how that made them feel. It sounds simple to be consistent, and it seems simple to follow a plan of encouraging good behaviors and discouraging bad, but Dr. Stein warns that human nature has a tendency to notice the bad over the good. He also stresses the importance of presenting a united, consistent front. This means that siblings, teachers, and other caregivers must be on the same page regarding your strategies.
Flopping, Dropping, and Refusal
presentation by Dr. Anna Esbensen and Gretchen Carroll, CCHMC
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